Dr. Edward Sykes, from the Science Media Centre, is an observer with the CMRC executive board. It has been suggested on Phoenix Rising that Dr. Sykes urged Dr. Holgate to issue the statement of "full support" for the CMRC's embattled vice-chair, Dr. Esther Crawley. With the withdrawal of ME Research UK from the collaborative, it appears that this "full support" was apparently less than "full." Given the transmission of such misinformation, I am trying to track down what happened. This morning, I sent the following e-mail to Dr. Sykes and the entire CMRC executive board.

Dear Dr. Sykes--

Last week, Professor Holgate informed me that Dr. Crawley had the "full support" of the CMRC board, despite her ill-advised slide-show in front of the nephrologists. However, the subsequent announcement from ME Research UK that it was withdrawing from the collaborative, effective immediately, suggests that this statement of "full support" was in fact inaccurate even as Professor Holgate made it. While ME Research UK did not state that Dr. Crawley's recent antics prompted its withdrawal, the timing of the announcement obviously leaves little room for doubt.

This raises the question of why Professor Holgate provided me with what could be called "inoperative" information. As both a journalist and public health professional, accuracy in communications is important to me. And when I am provided with apparently inaccurate information, I like to understand how that happened, and why--just as my fellow journalists in the U.S. are trying to figure out who said what to whom, and when, in the Trump administration.

Professor Holgate's statement of "full support" certainly implied, at least to me, that he had canvassed the entire executive board beforehand. Given the subsequent evidence suggesting that the statement was not accurate, I now need to question whether such canvassing, in fact, occurred.

On the Phoenix Rising forum--where the thread about Dr. Crawley's recent public spectacle has attracted an astonishing 31,000 views--it has been suggested that Professor Holgate issued the statement specifically at your urging. I have no idea, of course, if this is so. Can you confirm if this is the case?

If so, can you explain whether you yourself canvassed the entire board? If you didn't make the suggestion for the statement, can you shed any light on the sequence of events that led to this apparently inaccurate information being disseminated? I will be posting a blog on these recent developments early next week, probably Monday.

Thanks much--David

David Tuller, DrPH
School of Public Health
Graduate School of Journalism
University of California, Berkeley

"One of my friends has a daughter who is ill with severe ME. In her medical notes it was recorded, less than three years ago, that the hospital was advised by the influential regional CFS paediatrician that; “N.G. [naso-gastric] tube feeding is not part of the spectrum of even severe CFS”. Alternative diagnoses of an eating disorder, or a mental health problem were therefore suggested, even though the child had not even been seen by that paediatrician, at that point.

The child had originally been admitted to hospital with a mistaken diagnosis of idiopathic chronic pain syndrome – for which the treatment was intensive physiotherapy. This had caused her to deteriorate disastrously, to the point of needing tube feeding and experiencing intermittent paralysis in her legs and arms. Further problems arose later when the same paediatrician, (having by then seen the child briefly), informed the hospital that paralysis is not part of the clinical presentation of CFS/ME, and gave a new diagnosis of Disassociation/conversion disorder."

That is utterly shocking. Paralysis is known to occur in ME. I am appalled at the ignorance and arrogance of the medical profession. This is the worst sort of negligence. These people are unfit to practise medicine. They are playing with human lives.

This had caused her to deteriorate disastrously, to the point of needing tube feeding and experiencing intermittent paralysis in her legs and arms. Further problems arose later when the same paediatrician, (having by then seen the child briefly), informed the hospital that paralysis is not part of the clinical presentation of CFS/ME, and gave a new diagnosis of Disassociation/conversion disorder."

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I totally despair of the medical profession. There are numerous reasons for paralysis, why does it have to be "its not part of ME therefore I will present the least scientific diagnosis". On top of that how does he know that the paralysis was or wasn't connected to her ME and not another cause without any investigation?

Surely all the other docs involved in her care cant just take this kind of nonsense as gospel or are they obliged to do so if they are less senior or perhaps they are just too stupid to see what happened or perhaps they see the need to protect the hospitals previous mistakes?

To be honest I really think that doctors know that during their career they will make hundreds of misdiagnosis so they all just stick together to cover each others backs and arses and furthermore once you enter the profession it becomes abundantly clear that that is how things work.

This especially helps junior doctors as they are completely clueless and need the seniors to cover for them and this process unfortunately is a means to an end as the young docs will carry this process through their whole career, fucking up and covering up into the senior roles.

The problem is when the rest of society lets them do it and treats them like Gods because from being teenagers in medical school upto their mid twenties they crammed a load of outdated "facts" into their heads from books written decades prior to their entry in medical school by people who learned those "facts" more decades before.

"One of my friends has a daughter who is ill with severe ME. In her medical notes it was recorded, less than three years ago, that the hospital was advised by the influential regional CFS paediatrician that; “N.G. [naso-gastric] tube feeding is not part of the spectrum of even severe CFS”. Alternative diagnoses of an eating disorder, or a mental health problem were therefore suggested, even though the child had not even been seen by that paediatrician, at that point.

The child had originally been admitted to hospital with a mistaken diagnosis of idiopathic chronic pain syndrome – for which the treatment was intensive physiotherapy. This had caused her to deteriorate disastrously, to the point of needing tube feeding and experiencing intermittent paralysis in her legs and arms. Further problems arose later when the same paediatrician, (having by then seen the child briefly), informed the hospital that paralysis is not part of the clinical presentation of CFS/ME, and gave a new diagnosis of Disassociation/conversion disorder."

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How do things like this not become wider known? The arrogance and ignorance is shocking.

The child had originally been admitted to hospital with a mistaken diagnosis of idiopathic chronic pain syndrome – for which the treatment was intensive physiotherapy. This had caused her to deteriorate disastrously, to the point of needing tube feeding and experiencing intermittent paralysis in her legs and arms. Further problems arose later when the same paediatrician, (having by then seen the child briefly), informed the hospital that paralysis is not part of the clinical presentation of CFS/ME, and gave a new diagnosis of Disassociation/conversion disorder."

You will always have bad apples in any profession, but what's shocking here is that most of the rest of the medical profession are prepared to just stand idly by or collude. There seems to be more incentive to close ranks and protect each other than protect the patients. There are doctors who know what's going on, and I just wish more would speak up. Not enough seem prepared to do so. That alone undermines our confidence in the profession since it's how the rest deal with the issue that is the best measure of rightfully earned trust.

There are doctors who know what's going on, and I just wish more would speak up. Not enough seem prepared to do so.

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I recently found out about Sophie Scholl an activist who was executed in WWII. She said

“The real damage is done by those millions who want to 'survive.' The honest men who just want to be left in peace. Those who don’t want their little lives disturbed by anything bigger than themselves. Those with no sides and no causes. Those who won’t take measure of their own strength, for fear of antagonizing their own weakness. Those who don’t like to make waves—or enemies. Those for whom freedom, honour, truth, and principles are only literature. Those who live small, mate small, die small. It’s the reductionist approach to life: if you keep it small, you’ll keep it under control. If you don’t make any noise, the bogeyman won’t find you. But it’s all an illusion, because they die too, those people who roll up their spirits into tiny little balls so as to be safe. Safe?! From what? Life is always on the edge of death; narrow streets lead to the same place as wide avenues, and a little candle burns itself out just like a flaming torch does. I choose my own way to burn.”
― Sophie Scholl

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If only we could get more medics to make waves! What about occupational therapists and physiotherapists?